Fairly rapid tissue and muscle wasting during disease onset

I fell very ill in January this year and over the first months of intense downward spiral of all the symptoms and things happening one of the most major is a serious tissue wasting/atrophy that occurred over every square cm of my body that took a few months to progress.

I saw there was another thread on muscle wasting, and I thought I would add to that but I know this is much more than muscle because every part of my body, even all the places which anatomically do not have any muscle lost tissue. I am certain of this. Even my friends and family noticed that all these veins have become exposed everywhere on my body that weren't before and my skin has gotten very very soft and flabby. My face and eyes look so tired because of this :-(

It started probably right when I got sick it's just I didn't notice, yet maybe a month or so into the disease I was getting severe numbness/tingling and pain in my extremities and my socks started leaving huge indentations in my legs and feet that they never did before and it wasn't edema/swelling. My underwear would also leave marks when it didn't before. I am a thin and muscular person and never had any indentations left by clothes.

The period of rapid wasting seemed to slow down or stabilize a couple months ago and coinciding with that the daily numbness/tingling and pain went away, they definitely were connected.

This isn't due to inactivity because even though I cannot exercise anymore I still work and am able to get around and have not stayed in bed. It was just too rapid and it is definitely because of the disease causing something to go horribly wrong.

Does anyone have any thoughts as to the root cause of this? Based on how I feel my disease is progressing if I can correct what caused this it would fix a lot of my problems.

Is it possible that you're talking about atrophy of the subcutaneous fat layer when you say you were wasting in areas you don't have muscle? This is common in connective tissue disorders which seem to be seen quite frequently in people with a diagnosis of ME/CFS.

I have wasting of the pads of my fingers, so if I push on them they stay flat and they retain indentations for a long time if I press on a button or hold onto something like a key tightly (which I tend to do because I drop things easily).

My hands look like the hands of someone at least 20 years older than I am because of loose skin on my fingers and the back of my hands

I got sick with something viral-like in July 2012. I lost some weight gradually. But then around March 2013 or so my body began to melt away. I went from 185lbs in 2012 to about 150 lbs. And it wasn't just 'de-conditioning'. I was urinating A TON around that time - I felt like I was pissing my body away. It was so odd. I am up to about 160 lbs now but I've lost so much muscle. The tendons on my hands stick out, as does my scapula and ribs. It's very distressing. I was convinced I had ALS but two EMG's have been negative.

I had this too at onset, the wasting as you described. I felt deathly ill.
I described it as feeling like I was in the last 2-3 weeks of a terminal illness.

I lost a over a stone of weight and have never returned to my normal healthy weight of 65kg.
I can't seem to get over the 60kg mark. It's been like this for 12 years.

I have not mentioned this before but I remember being horrified at how scratching my leg was so painful.
Even lightly scratching was painful. I still to this day cannot bear tight clothes, they hurt.
Any pressure on my skin and I have to adjust.

I remember when I became ill in 2009 after a couple of months looking at my legs and thinking they looked like the cancer patients I treated in the hospital. I was extremely fit before becoming ill and was very careful not to stay in bed so I wouldn't become "deconditioned" during those months, so like you was surprised by the amount of atrophy and wasting. Also wasting in thenar and hypothenar eminence and like you, finding marks all over my skin from clothes that hadn't caused marks before.

The only thing I could think of as far as the indentations in skin etc was due to the autonomic dysfunction and low blood volume causing a functional "dehydration" state leaving the skin less elastic. Perhaps it could account for some of the loss of vigor in the other tissue as well. The whole paradoxical renin-angiotensin-aldonsterone abnormality that they find in some POTS/OI patients might be involved here.

I still have that wasting and feel atrophied years later and the tingling numbness in extremities. socks leave marks etc and get imprints on my skin very easily. My skin is dry and hands look like they are 70 yrs old, my skin is very loose and and can be stretched the plumpness and elasticity seems changed.

I feel the natural connective tissue processing and flow in my body is interrupted or impaired in some way.My gut also does not seem to be processing through normally either.
I think there could be a multitude of possibilities for these things or cause.

My instinct is that its a good sign that you are having some improvements in these areas leokitten.
Hopefully its signs of some natural recovery. Also you are doing lots of things to try and help yourself so how could you figure out if its a natural recovery or one of the things you are giving yourself or a combination of things.

Either way there is good signs
If it could be pinned down it would be even better.Good thread!

Interesting about the Thenar and Hypothenar eminence......I have allways wondered why mine is so wasted and that was an early thing for me in my progression signs wise to me in my body. It was always a very strong point in my hands before getting sick I have often wondered about it. Thanks for that Ruthie24!!!

When I first became seriously ill, after years of having mild - moderate ME, I had a severe loss of weight of 56 lbs and severe muscle wasting and felt that I was dying. I gradually improved and found out later that this is a common pattern in Lyme Disease, as the immune system goes on a rampage but the Lyme bacteria 'cloak' so that it is the immune response that goes down while the bacteria is still carrying on destroying your body.

Funny how so many had this wasting symptom early on in the illness. I too lost about 15/16kg over a period of a couple of months a few years ago, I looked and felt shocking, I've put the wight back on and more - I don't eat massively but don't have the energy to do much so it will sit there. Interesting what brenda says about Lyme, I've never been tested for this but who knows???

I feel the natural connective tissue processing and flow in my body is interrupted or impaired in some way.My gut also does not seem to be processing through normally either.
I think there could be a multitude of possibilities for these things or cause.

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aimossy one of my symptoms is impaired gut/digestion function just like you, it has very slowly improved but for months I felt like my gut wasn't able to digest things at all, I would feel so sick in my abdomen all the time and I was pooping badly digested food. It has been like my entire gut is malfunctioning. Also since the beginning, along with the pain, my stomach and intestines are constantly making loud noises like they are not happy, I notice it more at night in bed when its quiet, some days it's like non-stop.

Right after I fell ill in January I completely lost my appetite and had nausea and vomiting for the first few months, especially when things were at their worst with the flu-like symptoms and fatigue. Very slowly my appetite has come back for a little bit here and there but it's been a slow process because my gut just feels bad.

Is it possible that you're talking about atrophy of the subcutaneous fat layer when you say you were wasting in areas you don't have muscle? This is common in connective tissue disorders which seem to be seen quite frequently in people with a diagnosis of ME/CFS.

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You are awesome Sea, I never thought of that but after reading this and thinking about it in light of the symptoms it very likely is a rapid lost of the subcutaneous fat layer everywhere. It just makes the most sense to me of what is being lost in our bodies.

When I first became seriously ill, after years of having mild - moderate ME, I had a severe loss of weight of 56 lbs and severe muscle wasting and felt that I was dying. I gradually improved and found out later that this is a common pattern in Lyme Disease, as the immune system goes on a rampage but the Lyme bacteria 'cloak' so that it is the immune response that goes down while the bacteria is still carrying on destroying your body.

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I tested negative for Lyme twice since falling ill this year using the Quest Dx standard test Lyme Disease Ab with Reflex to Blot (IgG, IgM), though a couple people have told me doing the standard lab tests might not catch it and I might have to do more in-depth Lyme tests? Not sure really if anyone can help here.

I do think though the aldosterone-renin-angiotensin theory is very plausible, my hormones have become totally dysregulated since falling ill with this disease this year and I was fortunate to get many data points from early on to now showing how things change very quickly.

Sea and leokitten, is it possible that some of the skin stuff (I also get those things you are talking about) could be some form of dehydration of the tissues. It could absolutely be fats I was just wondering if dehydration could also be a possibility.
lactose and fructose and gluten are common problem foods for us leo but I imagine you have read that.(personally fats are a prob im just not processing them)
god I have to go to bed!

As testing is fraught with problems, some people go by symptoms especially if they go the alternative route. A trial of anti-biotics sometimes is useful.

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The problem with this is doing a proper treatment for Lyme just as a trial is not possible since you have to initially do 6 weeks of hardcore IV therapy with a cephalosporin or other strong antibiotic.

Dr. Lerner's treatment for Lyme:

The protocol for Lyme disease, serologically positive or epidemiologically positive and serologically negative, that I use is a six-week’s course of intravenous therapy. Ceftriaxone is preferred. If there is a history of allergy to penicillins and it is not an immediate allergy, I routinely refer the patient to an allergist for cephalosporin testing. Under ordinary circumstances if this is negative, ceftriaxone is given; depending on the size of the individual 1-1.5 grams intravenously every 12 hours. The patient is seen weekly. They are asked not to travel further than 45 minutes from this office, because a PICC lines has been placed and infection of the PICC line site or side effects to the cephalosporin can occur; particularly biliary dyskinesia or abnormal liver function tests with ceftriaxone. Cefotaxime may be substituted for ceftriaxone in the case of biliary dyskinesia. If there is biliary dyskinesia, Unasyn, or ertapenem may be used. If diagnosis of Lyme occurs after antiviral treatment has commenced, and patient shows liver sensitivities with Valcyte dosing, Unasyn is recommended. Unasyn is given 2 grams IV piggyback every 12 hours. Ertapenem is given 2 grams IV piggyback every 24 hours. The same dosage of cefotaxime (as ceftriaxone) of 1-1.5 grams is used, but the administration of cefotaxime IV is every 8 hours, rather than every 12 hours, for ceftriaxone. Cefotaxime has no hepatotoxicity. Cefotaxime is excreted by the kidneys.

The goal of Lyme therapy, of course, is a well patient, but particularly a negative serology. Oral suppressive therapy is continued for at least three months or until the Lyme serology is negative. Typical medicines used for Lyme suppression after the original six weeks are amoxicillin; in a 70-kg individual 750 mg before every meal and at bedtime. Doxycycline 100-150 mg twice daily after meals and with a full glass of water may be given in the place of amoxicillin for suppression.

I tested negative for Lyme twice since falling ill this year using the Quest Dx standard test Lyme Disease Ab with Reflex to Blot (IgG, IgM), though a couple people have told me doing the standard lab tests might not catch it and I might have to do more in-depth Lyme tests? Not sure really if anyone can help here.

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It has been found that for some people whose initial Lyme tests are negative retesting after a short course of antibiotics will yield a positive result. Something to do with bringing the bugs out of hiding and into the blood again. Sorry I don't know about the accuracy of any of the testing though.